A friend asked me a few days ago “you work so hard! Do you find it difficult as you work on breast cancer all the time?”
The honest answer is no, I don’t really think of it like that, I just find it part of my life and my role that I’ve come to do. Turning a shitty end of a stick into something useful. I have mentioned before that I knew when I started abcd that it would be all or nothing for me. So I had to run with it and I have run every since. My life isn’t normal, it will never be normal with an incurable disease but I guess I make it that way. Abcd takes up a lot of my time and I fit everything in around it, family, exercise, friends, whatever. Yes, I do admit that I do concentrate on it more than anything else and it is like my baby. I’ve created this thing, sometimes its like a monster that I don’t know how to control. The emails, the messages, notifications on twitter and direct messages (and then on facebook) blogging and attending meetings, patient involvement and conferences. Then there is also METUPUK (which I had neglected but now with 14 advocates its gathering momentum looking at the objectives – I’m forever indebted to their help) But I had a high pressured, well paid job in the past and I’m good at networking and communicating and multitasking. If I stopped I would think about me and what is happening so there is a reason for what I do. Don’t think there isn’t, there is, and it kind of keeps me sane being “insanely busy” all the time.
The reason I created abcd was for information and patient choice (mainly due to my own lack of choice on breast reconstruction) and I love helping people (did you know abcd was going to be called “Help the People” after the song by Cherry Ghost? It was when i was originally diagnosed – oh the tears I’ve cried over that song… “1000 slowly dying sunsets” and it was filmed in Manchester) People Help The People
and after creating the web site and then a year later getting secondary breast cancer I felt I needed to give the patient voice out of the “clinical” charity information. The leaflets you throw in the bin because you can’t be bothered reading them.
In 2015 I created the #SBCinfographic to help spot red flag symptoms for primary breast cancer patients. (Secondary Breast Cancer Infographic blog)
And it was a success – I had surveyed people on facebook and twitter whether they thought it was a good idea to have this OR was it “too scary” (as I was told) – no people wanted this as some of them said they may have also spotted the red flags earlier if they would have had this information. It was NEEDED.
So the infograhic was born and created by a friend first and then my web designer took it under his wing and created what you see now. A great simple infographic without too much information but perfectly formed.
People started using it and I shared it out and last year a charity in Canada used it at a conference – they thought it was wonderful. They didn’t change anything just wanted to use it to inform people. Others were interested in it too, I’ve had breast cancer nurses ask me about it and hospitals use it and many bloggers use it and have shared it in their blogs. It was something I wanted to help develop to stop the stigma around secondary breast cancer and the fear. To know that the pain in your little finger isn’t secondary breast cancer is useful. It was an objective of METUPUK (which I created with the blessing of friend Beth Caldwell co-founder of METUP) to inform and educate people about secondary breast cancer and it was working. I would tweet out “complications with operations are small % risk but you are TOLD about every possible issue with metastatic breast cancer ~30% will get secondary breast cancer” this is why I created it. People needed to know. We’ve had so many twitter rows with people not even wanting to address this issue and now the news is out that with some breast cancer types they can have a reocurrance and develop secondary breast cancer even 20 years out from their primary diagnosis so this is getting more and more important.
I was thrilled when Breast Cancer Care contacted me in September with an email to say that as part of the Not Second Rate campaign they had found my infographic and were going to use it as “best practise” consider it in the report and how HCPs can download it to provide to their patients.
This was great news and I was so pleased that they were going to, from what I could gather, recommend that this be used for primary breast cancer patients moving on in packs possibly used a year out of diagnosis and after all treatment, surgery etc had finished.
I already had the infographic on Gateway C (a resource which was part of the Cancer Vanguard initiative in Greater Manchester).
The next email and discussion was that Macmillan wanted to use this aswell in relation to “top 10 tips for GPs”. I was invited to the Breast Cancer Care Nursing and Support Secondary Breast Cancer Advisory Committee to be held on the 4th December 2017 in London. Again thrilled that they had seen the work I had done and wanted to invite me along to for the next steps.
On Wednesday 22nd November I had a DM tweet from their Clinical Nurse Specialist for secondary breast cancer to see if I was available to speak Friday. I messaged back I was and I had the strange response that annoyed me straight away to say “after 10.30 is good for me. Call switch board and ask for me”
Well it was YOU who wanted to speak to ME but hey go on I’ll ring you… so I rang this morning at the allotted time and she wasn’t there so 15 minutes later I had a call back.
To cut a long story short and to get the gist of it, she told me that they had the meeting with Macmillan this week and they talked about including the infographic and for Breast Cancer Care too also include this in their publications. It will need some more information adding in but basically yes its a great idea and I’m really “inspirational” (patronizing) and the infographic WILL be in the “good practice report”. So they’ll need to make some changes and then use their colours etc on branding and Macmillan will probably be doing the same…
I listened to all this being said and I can’t remember what came out of my mouth first or at what point I flipped. I know I started shaking and I asked if I’d got this right that what they were doing was rebranding it under their own logos and not using mine? Yeh, that was the gist of it. I flipped, near to tears I said I’m disgusted that you are doing what you are doing, I work for nothing and you’ve just come in and taken over this and how dare you? I have terminal cancer and how dare you do this to me! I’ve worked for 4 years, 4 years I get no pay, do you get paid? So when you do I hope you think about me and whether you would work like I do for nothing, to have this taken away from me and not even have this discussed and you’re telling me this is what you’re doing. I was FUMING, I ranted on some more, pacing the house and I slammed the phone down. Then I tweeted her and said “One question Catherine, so are you telling me you are not even acknowledging me on your new inforgraphic you produce? And neither will MacMillan?”
I knew she wouldn’t answer the tweet so I picked up the phone and asked her directly. “Ah well it’s not policy to be able to do that so they’ll change it and no erm no we won’t be doing that” I raised my voice and she quietly replied – you know that patronizing don’t shout at me and I will speak quietly to show you that I’m in control manner. Well you can stick it. So I told her thanks very much, thanks for nothing and bye and put the phone down again after ranting about how she should have originally phoned me.
Sobbing I rang Jeff, I ranted and sobbed. How dare they do this. But what is the fucking point, why do I bother? I should just forget it all. I rang a couple of friends, ranted, cried some more. I hope Catherine is happy to have upset a terminal cancer patient like she has, like they have.
I’m going to write to both CEO’s and place a complaint. How dare they just pull the rug from under my feet? And they call themselves a charity? I think they need to look at themselves. I offered my time to be at the Conservative party conference stand I complained about their original stand idea and their pathetic message they were portraying which were going to be TWO HUMPS IN THE ROAD TO PORTRAY THE UPS AND DOWNS OF SECONDARY BREAST CANCER – (looking like a pair of breasts) how totally out of touch they are… And I bet they were gutted I was there and I keep appearing at the many conferences I attend. What do they do for me? How do they support me with abcd? They have never ONCE contacted me about the infographic to say if I could help them or lets collaborate. Oh now people are using it and they are backpedalling with a road roller over me.
It’s not the last you will hear of all this, I have a number of issues with charities and patient involvement groups and I will be writing about these issues soon. I will be shining the light on issues that use and abuse patients. Its going to be interesting, I have found out a lot from patient involvement and its not all you’d expect it to be.
Oh and another charity I applied to for the 3rd time for a patient involvement role told me “you are not articulate enough” Seriously? Is this articulate enough – fuck off.
So this is where I’m at.
Please tweet and share my #SBCinfographic and if you would like to tell BCCare how disgusted you are how I’ve been treated feel free to tell them. I will appreciate your support like I always do. Thank you, many of you have already given me messages of support and I truly appreciate that.
Charity… Don’t talk to me about charity.
